Web Portals Vital to Patient Control of Health Data: Study

A report in California commissioned by the publisher of Consumer Reports calls for patients to have greater access to their patient information through Web portals.

Although health care
organizations are making progress in digitizing medical information, patients
need more control over their data, and Web portals are necessary to accomplish
this control, according to a new report announced on March 6. The study was commissioned
by the Consumers Union, which
publishes Consumer Reports.
Robert Miller, adjunct
professor of health economics at University of California, San Francisco,
performed the study, and the nonprofit philanthropy California HealthCare
Foundation funded it. The journal Health
Affairs published the report in its March 2012 issue.

For the study, Miller
evaluated five California health organizations to see how well they're adhering
to principles outlined by the Consumers Union in 2010. The principles were
written to encourage increased availability of patient data, with patient
privacy protected at the same time.

The organizations are Inland
Empire Health Plan, Kaiser Permanente, Nautilus Health Care Management Group,
Santa Clara Valley Hospital and Health System, and the Santa Cruz Health
Information Exchange. The study found that the organizations exchanged health
data only on a limited basis and that patients weren't informed of their rights
regarding access to the data and keeping it secure.
The study recommends that
health care organizations offer a portal for patients to view their
information. Two of the five organizations that the study evaluated, Kaiser and
Nautilus, had patient portals, according to the Consumers Union.
The study urges state and
federal governments to set a schedule for health care organizations to
implement Web-based portals, like those offered by Kaiser and Nautilus.
"For health information
exchange with patients, the lack of patient portals in three organizations and
truly robust patient portals in two organizations accentuated the lack of
patient engagement, control and data monitoring," Miller wrote.
Despite that, the report
does calls Kaiser's portal "robust" for allowing patients to view
test results, as well as information on allergies, immunizations and past
visits. Through its NextGen portal, Nautilus patients could also view test
results, request prescription refills and schedule appointments.
In the study, Miller recommended
that patients be able to correct or add information, have the ability to
communicate with their providers using a Web-based portal and receive reminders
of medical services they need. In addition, the study urges health care
organizations to create guidelines on how to keep patients informed of which
doctors can access their data and make clear the benefits and risks of
exchanging patient data.
The California organizations
studied were not transparent in showing how providers used data, Miller wrote.
They did maintain "audit" trails, but didn't inform patients that
they existed. The report also calls for greater patient education on how health
information exchanges (HIEs) operate.
The New York Civil Liberties
Union has also demanded greater
patient control of data within the state. In its March 6 report, the NYCLU
recommended that patients be able to "sort and segregate" medical
information so they can control which doctors see the data.
Although the Consumers Union
is advocating for patient rights to the data in California, the principles have
national implications, according to Mark Savage, senior attorney for the
Consumers Union. The goal of the
principles is to make the benefits of electronic HIEs fully available to
patients as well as doctors, Savage told eWEEK.
"There are very few
people bringing in the patient perspective and not nearly the effort to build
patients into the work [of building HIEs], so that's my primary charge,"
he said.
In addition to doctors
connecting with doctors, health care organizations need to consider how to
better connect doctors with patients, said Savage. The question is: what's the
best way to do that? "If we start asking that question, we'll probably see
a shift in the enterprise," he said.

Brian T. Horowitz is a freelance technology and health writer as well as a copy editor. Brian has worked on the tech beat since 1996 and covered health care IT and rugged mobile computing for eWEEK since 2010. He has contributed to more than 20 publications, including Computer Shopper, Fast Company, FOXNews.com, More, NYSE Magazine, Parents, ScientificAmerican.com, USA Weekend and Womansday.com, as well as other consumer and trade publications. Brian holds a B.A. from Hofstra University in New York.